I am often thankful that, thus far, I don’t have a severe or debilitating case of dyskinesia (involuntary muscle movements). Actually, now that I think about it, even though my dyskinesia is not wildly flailing and strong, the impact severity would be dependent upon whether or not you would consider a lack of sleep as being something that is severe or debilitating.
So I am thankful that I am not bothered by strong bouts of dyskinesia during my waking hours during times of high peak dosage. Yet, on the other hand, I do have problems with a “wearing off” dyskinesia – due to the wearing off of my medication as it is declining in my system. This wearing off dyskinesia is more severe – or maybe I just notice it more, during the night. Currently, my medication effectiveness is around 3 hours, if that! (and it used to be four or more hours of effectiveness).
I have had some nights when I have barely slept and most other nights in which I find myself frequently awakening with these involuntary movements. It feels like a restless leg syndrome – but instead of a leg or two, it’s a whole body thing. It starts off with my awakening about two to three hours after going to bed, and having the feeling that I can’t find a position or get comfortable at all. Then, a feeling of overwhelming restlessness hits. To make matters worse, my arms and legs start moving around. My only solution is to have to get out of bed and take my PD med and then wait for it to kick in to alleviate the episode so that can try to rest until the next episode hits.
During the day, I have noticed some of these types of dyskinesia movement episodes, but at this time, the episodes are so slight, that I can cover them up. For example, if my hand moves upward, I will just redirect it to scratch my head. If I dance a little, I make it look like I am just restless and kind of just intentionally doing some moving around.
These dyskinesia movement episodes are not painful – unlike the cramping or twisting movements of dystonia. I have bouts of dystonia too – in the day and during the night, and when that happens, it is painful. Nevertheless, the dyskinesia is equally disruptive on my ability to obtain adequate sleep. As I mentioned above, by taking my Parkinson’s medication at the times when I awaken (making sure a few hours has passed between dosages) can be of great help, but unfortunately, it takes the medication a while to kick in. By the time the medication kicks in, my sleep has already been significantly disrupted -and not just once a night, but at least twice. I also dread taking the medication so frequently, particularly at night, because I fear (and I know) that my body is getting used to depending on this constant intake of medication every few hours (which is bothersome that I have to take this at night) and it is noticeable and disturbing to me that the time duration of effectiveness of the medication between dosages seems to be diminishing gradually over time. I just don’t want to do anything to unintentionally further a process of needing a pill more and more often.
Dyskinesia is a side effect of the Parkinson’s medication. This may make someone question whether or not being on the medication is “worth it?” For me, the answer is an unequivocal, “Yes! My medication is worth it!” I am able to function more than the alternative of not being on it, especially during the daytime, even given my current lack of sleep at night. Prior to the initiation of medication, I was well aware of a rapidly growing decline in my functioning ability to accomplish day-to-day tasks. I want to also mention that I don’t rely solely on the medication, as I combine medication with exercise, as well as dietary changes to provide better nutrition.
At some point, I may have a case of more severe daytime dyskinesia, at which time I will have to work with my doctor as to what to do and how to handle it. More severe dyskinesia is a very real risk (if not a likelihood) the longer that I am on levadopa-based medication and with my requiring increasingly higher dosages. Thanks for visiting with me and hearing about my topic of dyskinesia today! Keep on!